Navigating difficult ‘Parky days’ that strike for no good reason
Sometimes there's no satisfactory answer as to why we feel bad
One of the most disruptive aspects of a disease like Parkinson’s is the lack of predictability, which shows up in many ways. In the long term, there is the unpredictability of how quickly and in what ways the disease will progress. There is the shorter-term uncertainty of how each of us will respond to any given medication or treatment. And then there’s just the unannounced “Parky day.”
What do I mean by a “Parky day”? It’s one of those random days when you didn’t do anything out of the ordinary. You got the usual amount of sleep, you took your medication at the right time, you’re hydrated, and there’s no unusual stress or activity — but you just feel like crap.
It’s tempting to look for a culprit when you have a Parky day. When you say you aren’t feeling great, it’s natural for those around you to ask what caused it. It’s natural to ask yourself, too. And it’s good to try to understand possible triggers so you can avoid them in the future. But with Parkinson’s disease, sometimes there is no apparent reason for the increase in your symptoms.
‘Let me feel like crap’
When you depend on others to help you navigate life, you try not to rock the boat. You want to help your caregiver save their energy for the big issues. But Parkinson’s doesn’t care, and sometimes the boat gets rocked even when you do everything right. And it’s easy to feel guilty about a bad day. When a partner or caregiver expresses concern, it can feel like you’re being blamed or interrogated.
I struggle with this myself on Parky days. For me, these days involve extra fatigue, more prevalent tremor, more pronounced speech troubles, and difficulty concentrating. I mostly try to keep this to myself, not wanting to burden those around me. But I also know the first question will be “Why?” And there’s no satisfactory answer for any of us.
People mean well. And, naturally, they want to be kind and try to solve problems for us. But it can feel like blame when people start asking us questions about what we ate and drank, how we slept, if we stuck to our medication schedule, or other possible culprits of a bad day. Sometimes I just want to say, “Let me feel like crap, don’t make me dissect the reasons why!”
I am an optimist, as reflected in the title of my column. But that doesn’t mean I’m always pleasant. I try, I really do, particularly with my husband and good friends who only want the best for me and would do anything to make a bad day better. But I’m not always able to summon my patience and pleasant personality on a bad day. Especially when I know there’s simply nothing they can do to make it better, other than just waiting it out.
What do I wish would happen on Parky days? First, I wish they would go away, but in the absence of that, I wish I didn’t feel guilty or make my friends and family feel helpless against this disease. Some days are just hard, and we have to try not to take it out on each other. I still feel optimistic — as I write this, it’s a good day — but you never know when a Parky day may sneak up on you.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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